You are probably curious like everyone about the word “brain surgery”.

If those words don't scare you then pinch yourself, congratulations you're not human. Everyone is scared of “Brain Surgery”. It's not for the meek but neither is Parkinson's. it's the last thing you would have done. Just the idea of a brain surgery haunted me for the months leading up to the surgery. This was compounded by my friends, and my family who were equally nervous about my brain surgery.

I had a choice of San Francisco or Boston. I decided to go to Boston for two reasons for brain surgery; one is the great medical community and other is that I have family in Boston where I could stay.

In 2017, I started this journey with my Mom and Fletcher. We went to see my neurologist in Boston, Dr Veronique Van Der Horst who examined me and recommended a neurosurgeon for a Deep brain stimulation, Dr. Ronnie Alterman at Beth Israel Deaconess Medical Center. She said he was excellent. Dr. Alterman is one of those rare doctors who is on top of their game. He is a full professor at Harvard Medical School with 73 published articles on Deep Brain stimulation and Head of Neurosurgery at Beth Israel Deaconess Medical Center. You couldn’t find a better resume for a brain Surgeon. Well actually you can he has only 1/2% of operations go wrong and he's performed over 2,000 deep brain stimulation surgeries. I was confidant that Dr Alterman was the best. If you need DBS surgery by all means go to Dr. Alterman.

So the course was set. I returned to Honolulu to make arrangements to meet the neurosurgeon and his team in early 2018. I had an “on-off” exam at Dr Bruno’s Office then set up the remainder of the tests to be evaluated for DBS which included, a depression exam, cognitive exam, MRI, and a meeting with a social worker and a counseler.

I returned to Boston 5 months later for another set of early morning appointments with Mom and Fletcher. I met a bunch of different team members leading up to Dr Alterman. First we met Dr. Fox, a well known neurologist and DBS prgrammer. Dr Fox is amazingly an electral engineer and a neurologist. That must have been some hard years in college being a dual major for such demanding areas of focus. Needless to say, Dr Fox is smart, very smart. He will be the DBS programmer. I had to complete a MRI of my brain. It was during this visit waiting in the waiting room that I met a woman whose husband had recently have DBS surgery by Dr. Alterman. I asked her what her thoughts were on the procedure. her words were “Dr. Alterman is a miracle worker”. Okay, well that's pretty compelling.

Then there was Patricia Baum, neurological researcher who was a very warm and reasssuring presence and was kind enough to walk us to meetings and make arrangements amidst her real work. Later I would appreciate her even more during the brain surgery. Patricia walked us to Dr. Ronnie Alterman’s office.

Dr. Ronnie Alterman gave me the impression that he was very confident. You could think he was cocky but rather I got a sense that he was a perfectionist. He did everything himself, He sets the bar high for himself .

Many would argue that style is not important, I would argue it is the most important for for me, because it indicates to me a couple things: one is that he is perfectionist, 2. that he's confident and 3 he does everything himself. That is exactly what I was looking for in a brain surgeon.

I always ask doctors one question. “If you were in my shoes, would you do this?” He confidently said he would absolutely do this procedure. He said the surgery could be done with or without anesthesia. He said being awake has greater accuracy. Naturally I asked him if there's any painful part of the procedure. He said that for about 15 minutes when they put this frame on your head. He said they can't put any local anesthesia for the two screws that they had to put in your ear but that these are important screws since they are the alignment of the frame for the rest of the surgery. He made me a little nervous when he said. “all you have to do is last 15 minutes”. He sounded pretty serious.

The surgery was set for June 27th. it was also convenient for me to go Bill Presley's celebration of life which was very important to me. My Ewa Beach family gave me party. it would be an opportunity for me to express my gratitude to the Presley family who gave me the gift of a career of landscape architecture.

The last couple days were particultarly emotional for me. I was honestly nervous about the ability to be the same person after the surgery who entered the surgery. But I kept telling myself I have the best surgeon for this task. That was the argument. It was like a roller coaster. During the pre-operation check and routine CT scan, a nodule in my right lung was discovered. The surgery was delayed until they could figure out what was going on. All I could think of was a big ‘c’ word “cancer”.

A day passed. No news. A couple more days passed. Every day my mother would ask “have they called yet?’ Still no news. Then like an angel, Patricia emailed me “that they would be good news tomorrow”. We would learn that the big day was going to be July 12th.

The night before Cheryl and I decided to have password that we would reserve for after the surgery. Just to make sure I was the same person. My key word was “Pineapple Princess.” Her keyword was “Lub ba dub.”

The morning of the operation, I woke up at 4 in the morning. I had to take a scrub shower with a antiseptic liquid before going to the operation. I finished with my shower at 5 a.m. and the drive to Boston lasted less than an hour. I waited in the waiting room for my name to be called.

After ten minutes, we proceeded to the pre-op rooms. I was called into the pre-op room where preparing for the procedure begins. A nurse came in first and took some vitals. A few minutes later the anesthesialogist, Peter, put in an IV and then he introduced me to Dr. Bose another anesthesiologist. Then one or two nurses came in with the last person to enter was Dr. Alterman. Peter said he was going to begin administering local anesthesia to the locations of the screws. he said it was sting like a bee. I remember it was quite a few locations. also remember that he applied enough that it was dripping down my forehead and my neck.

Dr Alterman said good morning. He said he talked about the procedure with Dr. Fox and they came to the consensus that the best placement for me would be the globus pallidus internus. Not the subthalamic nucleus. I responded that i trusted their expertise in making that decision. Fortunately Dr Alterman is trained in both. At this point, the frame was delivered to the room. The frame came gift wrapped in blue paper with a string binding it.

Dr Alterman quickly opened the package and I was looking at a square frame. the frame came in pieces. Dr. Alterman had a pretty intense look as he started assembling the frame with precision.He used a unusual shaped screwdriver. You can tell he's done this hundreds or thousands of times. At about this point, he mentions to me that it would not be shameful to cry or make noises from the installation on the frame. The five people in the room were all looking at me with a penetrating stare.

It was the Moment of Truth. I was either going to succeed and live better or fail and suffer mobility problems. There's only one answer for me -- move forward!

When the doctor walked over and put the frame of my head, I knew right then that it was Game Time. I knew that it was going to painful. I didn't know how painful at that time. He started threading the first ear bar for the right ear and turning the screw until it became painful. Then very painful. I grimaced. My head tilted down. He proceeded without hesitation threading the left ear bar for the left ear. It quickly went from painful to very painful. And I mean very painful. I could have bitten down on something. I felt the pain coursing through my head racing from one side to the other. I was in so much pain from the ear screws, I didn't feel the four corner screws going into my skull. What I did feel was Dr Alterman pushing and tugging the frame to make sure the frame was on well. I felt like Hannabal Lector in “Silence of the Lambs”. He was methodical and didn’t hesitate . Looking back I was thankful that the time was kept to a minimum. The frame was my mask to prevent me form eating other people. As we proceeded to the MRI, I could feel blood dripping down the back of my neck.

In 1949, a Swedish physician, Lars Leksell, introduced the stereotactic frame, a surgical treatment that permits the accurate positioning of probes inside the brain or other parts of the body, based on three-dimensional diagrams.

I was wheeled in for a CT scan in the OR and Dr Alterman determined the alignment for everything to follow. Then Dr. Alterman proceeded to give instructions about tilting the table so he would have easy access to all parts of the frame. At this point I turned to Peter and said “are you going to put me out for this and then bring it back”

Peter said “no”.

I told Peter “That's okay, I want the best outcome no matter what the pain is”.

I talked to the “nurse in the room” and to Peter about their dogs during this time. They both showed me videos on their phones. I asked Dr Alterman if he had a dog and he said no but if he did, the dog would have to be large enough to hug.”

I asked Peter if he could give me something to relax my nerves. The idea of a drill bit punching a hole iin my skull was disconcerting. Peter asked Dr. Alterman if it was ok and he said yes.

‘Dr Alterman was intensely looking at his computer monitor determining his calcuations for the for the DBS. The screen was divided in 4 equal sections show different views. I was correct after all, Dr. Alterman was a perfectionist, confident, and total expert at this procedure. I felt reassured.

Peter applied some local ansthesia to the two burr drill locations on top of my skull for the DBS I felt two quick and sharp cuts on top of my skull. It felt like a papercut.

Dr Atlerman asked for suction, a couple times. Once the area was ready, I heard the whirl of an electrical drill. Dr. Alterman quickly made two burr holes. I learned later that a special drill is used, When the drill bit penetrates the skull, it immediately retracts the drill bil preventing damage to the brain. There was no reason to worry after all.

He then screwed two screws which I beleive were used to install a cap on each hole. I didnt feel any pain but i felt the sensation of the screw being screwed in.

After another 10 minutes, Dr Alterman inserted the electrode for the left side. Then he instructed an aid to turn on the electrode. As soon as he said that I felt my body relax. It was an odd sensation after 5+ years of constant rigidity to feel my body relax so suddenly. Wow this could be awesome. I belive what happeneed next was increasing the power to the electrode. Dr. Alterman asked me how I felt. I didn’t feel anything odd and my body was relaxed. After a moment, he said now lets do the right side.

I am not sure but I think he drilled the second burr hole at this point, screwed the plastic cap and proceeded to insert the electrode.

IT occured to me at this point that this is the last real opporuntity for something to go wrong. I waited for what seemed like 5+ minutes for Dr. Alterman to reappear in front of me to ask his asistant to turn on the DBS. I breathed a sigh of relief. Then the DBS was turned on and again my body relaxed. With the operation complete, the frame was taken off the head.

At this point, the doctor had the head end of the bed lowered and he performed one last CT Scan to ensure the electrodes were in correctly. My lower back immediately started to ache. I asked Peter if anything could be done, and he said the doctor is looking for the right location. Be patient” The doctor said “everything is ok, and rolled me back to a flat position.

About 10 minutes went by and they wanted me to complete a second MRI to confirm the placement and cessation of bleeding, and then like an angel, Patricia, a warm and friendly spirit, walked in and said hello and asked me how I was doing. It was so nice to have someone who was the opposite of the brutality of the procedure. Then they rolled me down a second time to the MRI and after the first scan of five minutes, I asked to be let out. I did not want to go back. The operator said I had to do this to complete the DBS and that they would medicate me to a point where I could accomplish this. I woke up in the 3rd visit to the MRI as it was completed. I was wheeled back to recovery and then to a room at the neuro floor and saw my lovely wife. My wife whispered in my ears lubuhdub. I was a little bit confused for a moment and she said lubuhdub again and I remembered my secret password pineapple princess and she smiled from side to side.

Circle Island Trek

November 27, 2018

Today I start a 5 day 131 mile perimeter walk around the Island of O'ahu. I am really looking forward to walking with a dear friend who walked in Europe with me this year and living outdoors for five days (yeah houseless or homeless). It should be really neat to see this island at a walking pace and perspective. Honk if you see me walking!

The Smokey National Park, North Carolina

Reflections

For the last two weeks, I have been trying to make sense of the walk. Frankly, I am still amazed I finished the walk. Let's be honest. The idea of walking a 1000 miles is just plain nuts. I have been asked a couple times how I did it.
Without a doubt a big reason I finished the walk was due to the incredible community I live in starting with my medical professionals - big thanks to Dr Michiko Bruno and Peggy Hill. Plus Two good friends, Clive Cowell & Maya Cowell who walked most of the way which was incredible. Mahalo Nui! I have the best partner who supported me throughout the planning and supported me leaving for 3 months, who is the love of my life, Cheryl Dacus

Lastly it was awesome having friends, colleagues and family wish me well on Facebook. Your kind words kept me going. I am very thankful and fortunate to live in such an incredible community.

Day 26 Completo

June 26, 2017Vatican

My hotel is 1000 feet from the Vatican St Peters Square. I wait until 9:30 am then check out and put Blum backpack in baggage storage.

With my credentials and passport in hand I head to the. Vatican. St. Peter's square is busy. I go through security and provide my credentials. Ten minutes go by and then the security comes back with the testimonium. It's a
Black ink on a tracing vellum. It has a gold
Fool incorporated into the testimonium as an anti fraud element.

I smile. It's done. I made it against all the odds. I still can't fathom that I took 2 million step and walked over 1,000 miles. It's too much for me to grasp.l

Day 25

I wake up early and spend the early morning completing some blog posts.i promised the nun who runs this Convent that I would go to 730am mass at the church .the accommodations are very nice and the dining area has a coffee vending machine which I use. At least 3 times this morning. Yum yum.

L head out a little early and when I reach the church the nun asks me if I was planning on going to mass at the Vatican. That sounds great. I head off to the Vatican.

The guidebok routes me to the river than all the way to a park then back to the river than the Vatican. Sounds simple but I get so lost twice that I over shoot the end of the map twice.

I end up meeting two Portuguese flight attendants for Ryan air and they lead me back to my map boundary. I finally reach the Vatican but the offices are closed today.

I go to my hotel and then go out to a bar to celebrate with 3 gin and tonics. Tomorrow I will go to the testimonium office.

Day 24 The Sheep

I was under the impression that I would be walking in suburbia and urban Rome today, but that's not the case. It's rural wheat fields. Bone dry. And the hottest day so far in the Mid 90s. I am packing 3 liters but my thirst could drink half at a time.

A steep descent from Monterotondo.the houses end quickly and it's dry wheat as far as the eye can see. Yikes!

The only sign is a piece of refuse wood with Francesco and an arrow scratched into the wood. And it's in the ground. It's like a no mans land.

Walk at least 5 kilometers in the open hot sun until the path has trees on each side. Cross a bridge and I check if the water is good for sitting in to cool off. Nope.

I keep tellIng myself one foot in front of the other. I see a large herd of sheep blocking the road ahead of me. There's two gypsies doing shearing or something to the sheep. I motion to the big man if I should just walk through the herd. He motions yes. I walk through the herd and like Moses they grudgingly provide just enough room for me to pass. Behind me they close the gap.

As I walk away it occurs to me how remote I am. I hustle EWup the hill dragging my right leg. At the top I take my Parkinson's medicines and walk fast.

The road continues on for another couple of kilometers then I see my first sidewalk and shortly thereafter my first gelateria. Yay!!

I walk to the B&B and they are full. The owner gives me a ride to the Santa Maria convento.